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Saturday, January 28, 2012

Round Twelve...Nearing the End

Tonight, we begin round 12 of chemo, the last month. In just 28 days, Scarlett will be finished with cancer treatment. I can hardly believe we have made it this far, and am in complete disbelief that it will be OVER so soon. I can only hope we never, ever have to go back to this.

We survived the week of eight appointments, but just barely, I think. It was difficult, to be sure, and there were a few moments in the last 6 days that I really just lost it. I know better than to schedule so much for myself in such a short time period, but I'll be more careful in the future to avoid it. Despite the ridiculous amount of driving and perpetually fussy baby (though, the FOUR new molars coming in don't help!!), I ended the week feeling good because I got so much done, despite the efforts of many to make me crazy. Here's some of what I dealt with (the good and bad):

GOOD: Therapy. In OT, Scarlett is showing great improvement in the way she uses her hands. She can freely pass things across the midline (from hand to hand), lift her right hand above her head and her left to 90 degrees. Her pincer grasp (pointer finger and thumb) is developing and she is banging things together. In PT, we are moving into crawling skills. She can hold herself on hands and knees for about 30 seconds, and rock back and forth if we are holding her legs from splaying out. She can't go forward on hands and knees, but she is learning to scoot on her tummy if we give her something to kick off from. Overall, she's making good progress and gaining more and more skills each week.

BAD: Insurance. I dealt with more insurance garbage this week than I have in months, and most of it was completely unexpected. We can't get her formula sent out because it hasn't been approved by the state insurance. We had to have her chemo sent from the mail pharmacy rather than pick up from the hospital pharmacy (like we have EVERYTHING else) because they don't cover a few drugs, including this one, at that pharmacy. And, the big one, which left me in a puddle of tears in the audiologists office (for which I have profusely apologized to her for): somewhere along the line, back in the summer when she was in the hospital weekly for transfusions and just plain sick, the claim for her hearing aids did not get processed through our old insurance. I have a sneaking suspicion this is my fault, but I honestly though it was taken care of, and we hadn't heard anything more since July. Basically, they never got paid for, so now the hospital would like us to pay the $4200 they have not yet received. We will go back to the insurance company to deal with this, but my initial reaction was blubbering. Somehow, my rational mind is rarely present when dealing with large bills.

GOOD: School. We came to a decision about Scarlett's schooling, at least until she is three. She will continue to attend her current school, CEID in Berkeley, until her interventions are reassessed by the school district when she is three. We toured the California School for the Deaf (CSD) this week, and while it is a great place for many students (it is a public school that serves most of the deaf students from toddlers to high school in northern California), it is not the right place for Scarlett right now. CSD uses a bilingual approach with American Sign Language and English; most instruction is done in ASL, which is not compatible with spoken English, meaning Scarlett would be in a nearly silent environment most of the time. CEID uses a variant on ASL called Signed Exact English, so that each spoken word gets a sign, allowing a child with some hearing (like Scarlett) to learn English both visually and auditorily. Her audiologist feels this is the best option, but the commute was intimidating (about an hour each way - CSD is 10 minutes away). We hemmed and hawed over this for months, especially since she will begin going to school there 4 days-a-week in the Fall. But, decision is made, and we all feel good about it.

GOOD, sorta: G-Tube. Scarlett will have a G-Tube placed on February 14th...Valentine's Day. For those of you have been following us closely, Valentine's Day has been intense for us for the last two years - V-Day 2010, I learned I was (surprise!) pregnant; 2011, Scarlett began her first chemo that day. So, in traditional Scarlett fashion, I will spend Valentine's Day in surgical recovery with my sweet girl. Despite the unfortunate date, we are glad to the g-tube in so that the NG tube can come off of her face after 11 months! Fingers crossed for fun on 2/14/2013!

UNDECIDED: Neurosurgery. We met with Scarlett's incredible, but very intense, neurosurgeon. He had not seen her in about 6 months, and there have been some significant changes to her MRI that he needed to see for future planning. The good part is that we have a plan; Scarlett will have a CT scan in April, then go in for a new shunt and reconstructive surgery in early May. This is a few months sooner that we originally planned, but her blood counts have been pretty stable for a few months, so her oncologist decided we could push it up a little. The surgeon would have taken her in to surgery right then and there, I think, if we had let him. We met the plastic surgeon who will participate in the surgery, as well as the ever-evolving team that surround the neurosurgeon; everyone is great, loves Scarlett, and are very pleased with her progress. The not so great part was hearing him describe the surgery. I won't go into too much detail (yet), but suffice it to say that he is not happy. It will be difficult to fix her head shape, and this procedure (probably over a few different surgical days) will not be the end. He expects this to set the foundation for proper growth, with follow-up surgery likely necessary when she is 4-5, and then again when she is done growing.

This weekend, Scarlett and I are recovering. The house is a mess, we have no groceries and the laundry is everywhere. Chris has to work every weekend (a trade in for his work-from-home days with his new job, which is going great, by the way!), so we are just going to get back to baseline energy levels. Next week, we are back on our regular 5-a-week schedule, so it should be more manageable, with hopefully less drama.

8 comments:

Wow. So glad for the good, and I feel you on the bad. I have had a few breakdowns over insurance BS. It sucks to feel so powerless over things that are so necessary but complicated. Hope you give yourself a break this weekend!

I've been following your journey for a long time now, but I don't think I've ever left a comment. I just wanted to let you know that someone in Orem Utah is thinking of your family and especially your sweet Scarlett -- in a none creepy way ;)

wow!! what a busy week!! I have been checking in with your blog over the past year and can't even believe her strength! <3 (and yours). Even if insurance companies drive you batty, you push on! Keep it up!

Now, I do have a question... what is wrong with ASL? Most deaf children will know ASL and SEE sign. Are you wanting to raise her to be oral? (That makes complete sense). I majored in deaf studies and spent lots of time working directly with the deaf community and there is just so much pride in ASL (for all ages). I don't want to talk down yoru decisions because as a parent you do what is best for YOUR child. I am just curious more than anything. :) Just being involved and emersed in that world, I know that the children raised oral are not considered "deaf" by that community. (just to offer the social aspect of it).

I am so happy that this is almost over for you all! Scarlett is amazing and I can't wait to read about her chemo and cancer free life in the very near future. Hang in there Mama. You are doing a wonderful job! <3

Yay for the last round of chemo! I have been following you since the beginning, it all starting back to baby center... I feel like your family is a part of mine at times. My DD is just one month older than Scarlett. I am so excited to see what the future brings. Don't worry about breaking down, we all have our moments and yours are justified. I think you should throw a end of Chemo party!!! Keep your head up and as alwaysBe Brave, Be Strong, Keep FightingLots of love,Christina & Kaitlyn.

I know this is old, but maybe it'll pop up and you'll see it. Don't beat yourself up about the house!! You are doing and incredible job with a very difficult situation. My house is in need of attention and I was 3 days behind on dishes and I've only had one doctor's appointment in the last week. Cut yourself some slack, you deserve it!